Wednesday, December 31, 2008


Yesterday I got a call from my neuro's office asking me to come in
and sign some papers for Tysabri. I wasn't sure what papers I would
have to sign because I have been on Tysabri for almost two years. I am also
a patient advocate for Biogen Idec so I was rather confused by this request.

It was below zero in the morning but we decided to get this "paperwork signing"
over early in the day. The office told me their would about 30 pages to read and sign
just like when I was first put on Tysabri.
I get to my neuro's office and I am handed a clip board with 4 pages attached.Plus the fax cover sheet ( I am not sure why I was given this).
The first page has my birthdate twenty years before I was born. Thanks guys!
That is what every woman needs first thing in the morning. To say I'm in my sixty's when
I'm really in my fortys ! When I brought it to the office staff's attention they said
they copied my original form suggesting I was confused by my MS and made a mistake.
Ok, I make alot of mistakes but I CAN guarantee I know my birthday and what year
I was born, especially because my birthday is next Week.
The only info it asked for my insurance info ( which the doctors office verifed early
December when I had an apppt there).
The other pages only required a signature and initials. These pages were all
explaining the risks of Tysabri. In case, as an advocate, I was unaware of these
risks !!!
I was very confused but signed and initialed and we left. When I got home, I emailed
my contact at Biogen Idec and asked why I had to resign this paperwork.
She had no idea why I would be asked to do this. It was NOT necessary or required
by Biogen Idec.
So I dragged my MS body out of bed in sub zero temps to go to my neuro's office
and sign unnecessary paperwork.
Ok, so I have been a little pissed at my neuro lately and this stunt didn't help.
Maybe it is time for a change. I need better care. I deserve better care.
I am always telling my support group they need to stand up for themselves
( so to speak) and here I am being treated like this. I am confused. Maybe
Obama isn't the only change coming.


Happy New Year !!!!!!!!


Lisa Emrich said...

Happy New Year Cathy!!

Got a question: what do you do as a patient advocate for Biogen Idec?

Cathy said...


Thanks for asking about being a patient advocate for Tysabri.
I basically share my story of my journey with MS prior to Tysabri and after.
I give a 12 minute speech while they eat dinner.I always see a few tears, then a few laughs. I don't ever try to talk anyone into changing meds. I just share my experience.
It feels wonderful for someone to Thank Me for sharing such a private journey but I literally wanted to shout it from the rooftop when I started to have such success with Tysabri.